This is Gavin. He is 13 years old. He has a catastrophic seizure disorder called Dravet Syndrome. He is my hero, and the most amazing, hard working, determined person I know.
On this journey, he has endured 12 medications that failed to control his Seizures, lost mobility, skills and cognition. He has lost words, needed a feeding tube, and I have watched as the smile, light and spark slowly fade from his tired eyes and body.
I saw some friends in similar situations move to Colorado to try a new treatment of Realm of Caring cannabis oil. For two years I have watched those kids have levels of success and watched as they regained quality of life. However, in California, our search for a place to obtain safe, quality, pesticide free, consistent oil for Gavin was discouraging.
The wait continued, and brought with it more seizures and lost days. Finally, on December 22, 2013, Gavin started a treatment that has brought so much relief and increase in his quality of life — our first “dose of hope”.
This is the beginning of reclaiming that gorgeous toothy smile, the sparkle in his eye and the ability to enjoy his life more than he has in many years! Jumping, eating, smiling, laughing, running, awake and engaging with the world around him, communicating and speaking better than he has in years. This is what we have found, as Gavin re-introduces himself to the world and we see hope emerge everyday.